Families impacted by Huntington’s Disease can fall into two groups, those that know from a young age and those that find out later in life. Whichever group they are in there are many challenges to overcome. What is HD? Should I get the test? how do I tell my children? Should I have children? What support is available? These are just some of the questions that go through their minds. We want to help and support them in answering all these questions through the HD Livin’ Hubs.
Later in their life many will become full time unpaid carers, caring 24/7 for a loved one with HD. Sometimes these carers need and deserve a break, it could be for medical reasons or just purely because they are exhausted, but every now and then they should be able to take a break. Unfortunately this isn’t always possible, they may not have other family members who can step in, or they may not be able to find a respite bed that can cater for their loved ones needs. We want to help, by providing specialised respite care in our HD Livin’ Respite Centres
Why we are here ?
It all begins with an idea, and a need born out of experiences, some good and some not so good. When life throws you so many curveballs, it sometimes feels that you just can’t cope anymore and just want it all to stop. But you know you can’t stop, so you just soldier on. But it doesn’t need to be like this.
We firmly believe that with suitable custom-made respite care, we can cope with the difficulties this cruel disease presents. Both carers and sufferers just need time to recharge, rest, and recuperate, so they are more able to enjoy that precious time you have with each other. HD Livin’ aims to provide that Respite Care.
HD Livin’ Hub
A meeting place with a safe, friendly warm environment where anyone impacted by HD can meet others that have been impacted by this terrible illness. We can support each other through the many challenges that come with HD and share our experiences to help others. We will also hold open days where professionals such as Doctors, Nurses, Carers, Occupational Therapists, Speech and language therapists, Dietitians, Researchers and other charities that work with HD sufferers can give talks and be available to answer questions and give advice.
HD Livin’ Respite Centres
A respite centre that provides 1-2-1 specialist care for people with Huntington’s Disease. A centre that feels more like a home, that can be booked in advance and has everything that is required to make the patients stay as stress free and enjoyable as possible. Giving the carers peace of mind their loved one is being well looked after so they can enjoy their well earned rest.